Our Family
Our Story
When we found out that we were expecting our first child, we were over the moon and as all parents to be do, we started our regular trips to Mothercare and became avid readers of everything maternity. The pregnancy was fine and even though our wonderful son was born a month early and spent 5 days in special care, life was great. Yes he did not sleep much and he was permanently throwing up but as we were reassured by the professionals ‘all babies are like this and not to worry’. When he was 8 months old and he was not rolling or sitting up like his peers we were again told not to worry and that ‘they all get there in their own time.. .’ As parents, however, we knew that things were not right but this brought an incredible amount of guilt. Firstly, it must be our fault that our son could not sit, coast, walk, babble etc like all the other children because they could do it so we must be doing something wrong. Secondly, despite being blessed with a wonderful, happy child we felt really sad and quite honestly looking back did not enjoy our son’s babyhood, being made to feel like neurotic, overly fussy parents by health professionals. When we were eventually referred to the community paediatrician 10 months later it was almost a relief to be told that our son did have a problem and that yes, he was not developing normally.
Our son is now 5 and it has been a rollercoaster ride, a ride which has involved a lot of tears, many sleepless nights, counseling, incredible frustration and an overwhelming feeling of injustice at the cards we and in particular our son has been dealt. Before we had him we were worried about the lack of sleep, nappies, feeding etc but these have been the easy bits. In tandem with this have been some incredibly rewarding moments, lots of laughs and the incredible satisfaction at the tiny milestones achieved – milestones which parents of normal children would not even notice. We will still do not have a diagnosis and worry constantly about our son’s future, but things can not be that bad as this year we officially adopted our beautiful daughter who is 3 and who also has very similar special needs to our son. Our house is even more cluttered now with toys, walking frames, sticks, support chairs…
Anyway, why have we set up Special Families? Having a special needs family is hard, really hard, and what makes us so frustrated is that things are not made any easier by the lack of specific, coordinated, accessible information. So much of what we have found out has been through word of mouth, overhearing a chance conversation, or whilst waiting for one of numerous appointments discovering a useful leaflet mixed in with the old magazines. Getting your head around having a special needs child and all the emotions and processes that this involves is hard enough without having to ‘discover’ benefits, support groups, therapies etc. on top of all of this. Hopefully, Special Families will simplify things just a little bit, tying together the myriad of information which is out there for us. We do not know everything – we are just parents like you, so please let us know anything which may be of use to someone else. Even if this web site only helps one person, it has been worth it.